A recent article by Jeff Wise (
@ManvBrain
) in
@NYMag
was a disturbing misrepresentation of the science around
#MECFS
and other post-viral conditions. It disregarded decades of evidenced-based research and minimized the experience of our communities.
When a patient has a damaged or broken aerobic energy system, they're unable to produce enough energy for that activity/task. Their body goes into the lactic acid system, and they start to have neurologic and other PEM/PESE related symptoms. Learn more 👉
ICYM: BHC is starting a new study in February to learn if endothelial dysfunction and hours of upright activity are linked to brain fog in people with
#MECFS
and
#LongCOVID
. Read Dr. Vernon's brief blog about the study here:
#brainfog
Check out our new 7-part series that validates and sheds light on one of the most ambiguous aspects of
#MECFS
, post-exertional malaise/post-exertional symptom exacerbation (
#PEM
/
#PESE
).
Share it with your medical professionals to help improve health care for
#pwME
.
@OpenMedF
RELEASED: "ME/CFS Crash Survival Guidebook: The Art of Living with ME/CFS." Includes info on how to meet your critical needs during a crash and ways to conserve energy in everyday living. For pw
#MECFS
,
#LongCOVID
,
#OI
,
#FM
, care partners, med providers.
In the coming weeks, we will highlight content from each video in the new
#PEM
/
#PESE
7-part series. 👇
This project was produced by the Medical Education Resource Center (
#MERC
) at BHC supported by
@OpenMedF
and other generous donors.
#MECFS
#LongCOVID
We are also disappointed by the misrepresentation of information provided by Dr. Bateman (
@LBatemanMD
) and other leading experts. This was irresponsible journalism.
In conditioned athletes, activity beyond anaerobic threshold is rapidly fatiguing & unsustainable. MECFS patients operate w/in anaerobic metabolism on day 2 of serial testing and for days after.
More: 👉
#PEM
#PESE
#medicaleducation
#MECFS
#LongCOVID
We know that even mild exercise can lead to post exertional malaise (PEM), exacerbating ME/CFS.
@4Workwell
has shared a great resource - letter to healthcare providers
Opposition to Graded Exercise Therapy (GET) for ME/CFS
#MECFS
#GradedExerciseTherapy
Exciting news! Our phase 2 clinical trial for Long COVID, featuring valacyclovir and celecoxib, is currently in progress, and we're thrilled to announce that we've already enrolled 50% of our target participants!
Learn more & get involved.
➡️ Click here:
BHC remains committed to further educating, advancing the science, and bringing awareness to
#MECFS
and
#LongCOVID
on behalf of the individuals and families devastated by these diseases. This is why
#MedEdMatters
.
Brain activity in
#PEM
study:
Decline in
#MECFS
patient performance accompanied by a significant increase in post-exercise brain activity. No significant brain activity responses were noted among non-fatiguing cognitive or motor tasks.
#pwME
#fibromyalgia
#LongCOVID
A study investigated gene expression across receptors in pain pathways. Individuals with
#MECFS
demonstrated significantly elevated expression of mRNA in Adrenergic, Sensory, & Immune receptors within the post-exertional interval.
#PEM
#medicaleducation
#LongCOVID
“On a cellular level, it’s like they did heavy weightlifting then ran a marathon while having the flu. Telling them to exercise more doesn’t make sense when everyday activities will cause them to crash.” -Clayton Powers, DPT
Learn more 👉
Happy Birthday to Dr. Lucinda Bateman! This pioneer in medicine has brought together the core elements of research, clinical care, and education to transform the way people with
#MECFS
,
#FM
, and now
#LongCOVID
are treated.
Clinical Trial for Women w/ Long COVID!
BHC is conducting a pilot study to test whether a combo of anti-viral drugs celecoxib and valacyclovir reduce fatigue and other symptoms in women w/
#LongCOVID
aged 18-65 yrs.
#clinicaltrial
#PVS
#ResearchMatters
Join us as the 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID streams online: April 3 and 4, 2024.
Register:
Continued and repeated episodes of
#PEM
are associated w/ worsened long-term functional capacity for pw
#MECFS
&
#LongCOVID
. This handout explains exertion and the "push-crash cycle" to
#medicalprofessionals
.
👉
The article published in
@NYMag
by
@ManvBrain
on Nov 4, 2022, “Has Long COVID Always Existed? The pandemic might not have spawned a new chronic illness but rebranded an old one,” was a disappointing step back 30 years to a time when the science of post-viral conditions was young.
Pw ME/CFS have waited too long for FDA-approved treatments. In her blog post, Suzanne Vernon, PhD, explains essential aspects of the microbiome research findings and says what it could mean for the future of dx and treatment.
👉
[1/3]During a
#MECFS
or
#LongCOVID
crash, a well-meaning loved one can either make things worse or assist w/ recovery back to baseline. The Caregiver Guidance explains how to meet essential needs while taking care not to exacerbate suffering.
@OpenMedF
#RESEARCHOPPORTUNITY
for pw
#MECFS
and
#LongCOVID
Utah. BHC is conducting a combined study on endothelial function, upright activity, and cognition. Two-hour in-person visit and surveys done from home for seven days.
#MedTwitter
ME/CFS ranks lower in terms of quality of life compared to major diseases like cancer, stroke, and debilitating autoimmune conditions. We want you to know that you are not alone in this fight. Your experiences are valid, and your voices matter.
As part of our education series for rehab professionals, we created the Heart Rate Variability handout to help cue patients when their heart rate may be exceeding a pacing threshold and could result in
#PEM
/
#PESE
👉
#MECFS
#LongCOVID
#MedEdMatters
#MERC
This powerful video, delivered by Doctor of Physical Therapy Clayton Powers, recognizes myalgic encephalomyelitis (ME/CFS), a condition often misunderstood and overlooked despite its profound impact on millions worldwide.
Clinical criteria for mast cell activation syndrome (MCAS). Episodic symptoms consistent with mast cell mediator release affecting two or more organ systems.
Ron Davis and Janet Dafoe joined members of BHC staff and board for what turned out to be an evening of sharing knowledge, passion, and sorrow.
#MECFS
#MECFSresearch
#MedEdMatters
New Video: Very Severe
#MECFS
is a debilitating condition causing profound suffering and life threatening symptoms. They are bedridden and dependent on care. Most doctors have had no training; leading to misdiagnosis, Inappropriate management and medical neglect.
US Reps Pressley, Duckworth, Beyer, and colleagues unveil the
#TREATLongCOVID
Act today.
✅Fund & expand access to
#LongCovid
Clinics
✅Prioritize $$ for underserved populations
✅Ensure treatment is not denied based on insurance coverage
@RepPressley
BHC is excited about the knowledge exchange and ideas discussed at a scientific meeting yesterday with Ron Davis, Baldinero Olivera ( Toto), Dr. Yellman, and other brilliant minds. Stay tuned.
@JanetDafoe
#MECFS
#pwME
COVID-19 is still very much a part of our lives. Special considerations should be taken for treating pw
#MECFS
and severe
#FM
should they become sick from the COVID-19 virus. This letter provides basic care considerations w/COVID-19 infection:
#pwMECFS
in Germany are requesting signatures to support their petition to the government for support and recognition. Click here to learn more and sign:
#SIGNforMECFS
#MECFS
#pwME
#ME
@loy_daniel_de
Dear
@BatemanHorne
, with this petition on ME/CFS we have a chance to make the German government listen. We need 50.000 supporters until November 9th. Anybody anywhere may sign.
Maybe you might want to sign & share?
#SIGNforMECFS
See
@NatGeo
's report on the microbiome variations in
#pwME
, featuring insights from scientist Suzanne Vernon, PhD, & others. "While the microbiome returns to normal in most people, some experience long-term disruptions that affect various body functions."
#MedEdMonday
Traditional therapy or exercise approaches do not work for patients with post-exertional malaise. Therapy providers and patients will need to adapt their expectations and approaches in order to reduce/prevent PEM. Learn more 👉
Video 5 shows significant increases in post-exercise ME/CFS brain activity, directly correlated with the # and magnitude of patient reported symptoms.
No significant brain activity responses were noted among non-fatiguing cognitive or motor tasks.
"Patients with chronic fatigue syndrome (CFS) have the lowest quality of life and greatest disability of any disease tested, including lung disease, rheumatoid arthritis and heart disease. A quarter of us are homebound."
@julierehmeyer
📘🩺Updated Medscape
#CME
on
#MECFS
in the age of
#LC
with Drs. Bateman, Komaroff, and Systrom.
Share especially with
#physician
and
#nurse
colleagues who may obtain CME for watching the webinar!
Every day living with ME/CFS and FM is an act of valor. We honor your struggle as we work to teach the healthcare and scientific communities what it means to "have ME/CFS, FM, Long COVID, OI," and what is needed to develop a cure.
“These findings underscore the need for early diagnosis and treatment of ME/CFS and Long COVID to improve daily cognitive functioning.” Read
@SuzanneDVernon
’s blog on orthostatic hemodynamic changes and cognitive impairment. Blog post 👉
@LBatemanMD
Happy Birthday to Dr. Bateman!
We are grateful to our founder for the tremendous impact she has made in science and medicine for the benefit of individuals impacted by ME/CFS, fibromyalgia, long COVID, and their comorbid conditions. We wish her the very best year to come.
You're invited! MECFS Research Roadmap Webinar Series
First session: Nervous System
When: Friday, August 25, 10am-2pm
Join:
*Current research, knowledge gaps, & future opportunities for
#MECFS
*Opportunities for questions, comments, & new ideas
Invisible disabilities are commonly misunderstood & misdiagnosed.
It's difficult for those affected by disabilities to access what they need. When disabilities are invisible, inclusive access is especially rare.
Diagnostic & Disability Resources webpage 📷
I am so proud to introduce Metrodora, a national center of excellence designed to close the gap in the diagnosis, care, and cure of women with neuroimmune disorders. Read about the launch of this entirely new patient-centric model of care.
Inspired by the unwavering dedication and passion of incredible women, we celebrate the advocates, collaborators, and thought leaders who are leading the charge in transforming the landscape of care for individuals grappling with
#MECFS
,
#LongCOVID
, &
#msCCD
.
Since joining BHC in January of 2019, Dr. Brayden Yellman has meticulously evaluated complicated new patients, many of whom are in the early stages of ME/CFS, FM, & Long COVID, each requiring 4-6 hours of intense initial evaluation and subsequent follow-up care.
If you know of friends, colleagues, or patients who might benefit from our resources and/or support groups, we appreciate your efforts in connecting us.
Event reminders, including registration links, are sent by email the day prior to each event.
We are surprised and troubled by the misrepresentation of information provided by Emily Taylor
@PlzSolveCFS
, Dr
@mhornig
,
@LBatemanMD
, the work of
@davidtuller1
, & the complete absence of existing science. We have contacted
@NYMag
and called for a retraction of the article.
#MedEdMonday
. PACING is the GOLDEN RULE when living with
#MECFS
or
#LongCOVID
. In Chapter 11 of the guidebook, we cover vital strategies and considerations to aid in learning the art of preventing and minimizing
#PEM
and a subsequent crash. 👇
@OpenMedF
WE NEED YOUR OPINION! BHC is pleased to announce the upcoming release of a multifaceted guidebook about living with
#MECFS
& managing a crash. We need your help to determine which cover to use on this downloadable & printable resource. PUT YOUR TOP 2 FAVS IN THE COMMENTS.
@Dysautonomia
@OpenMedF
@LBatemanMD
This series [] and the pathophysiology described throughout is specific to the clinical criteria outlined by NAM for ME/CFS. The inability to recover normally following...
1/2 A message from Dr. B (
@LBatemanMD
) on the
@OpenMedF
supported Medical Education Research Center at BHC: "We know that
#research
progress and access to care are critical needs. We also know that well-educated providers will
#diagnose
more patients and provide better care,
⚠️Cardio pulmonary exercise testing can be injurious.
We don't encourage it for ME/CFS patients.
We don't fault anyone for doing CPET, as HC providers make informed decisions based on each patient individually.
If CPET is done, be proactive to lessen
#PEM
"What is needed in medicine is for all clinicians to come up to speed on what we are learning about long COVID and then open our arms and take care of those people around us who have been sick for decades with symptoms of these complex chronic illnesses."
@LBatemanMD
"Like other medical experts I spoke with, she [Dr. Bateman] says the best way to address the growing need for ME and long COVID clinicians is to educate all healthcare workers about the illness...agents like health insurance companies and academic institutions to recognize ME."
#MedEdMonday
. Screening for
#PEM
is an essential skill for healthcare professionals. As part of our new education series, this guide helps them through a decision tree, symptom questionnaire, and screening tools. 👉
@amymooney145
@MasterBarb
@OpenMedF
@Dysautonomia
@OpenMedF
@LBatemanMD
Furthermore, we posit that many with other illnesses like Sjogren’s and MS may actually concurrently suffer from ME/CFS or PASC.
.
@BostonGlobe
covers the experience of a critical care nurse who was sick for yrs before being dx w/
#MECFS
.
@LBatemanMD
gives the medical expert perspective.
👇This is why BHC is teaching med professionals to recognize and care for
#pwME
.
#MedEdMatters
In today's paper: Learning to treat long COVID could help those struggling with myalgic encephalomyelitis/chronic fatigue syndrome, too; students with disabilities are often left out of Boston’s popular dual language programs; and more.
During a crash, it can be incredibly difficult to communicate your needs to others. These communication cards can assist you and your support network by creating an unspoken dialogue to ensure your critical health & comfort needs are met.
#MECFS
#LongCovid
@Dysautonomia
@OpenMedF
@LBatemanMD
While we welcome a robust debate, the PEM described in other illnesses (and in the IOM report) is often defined by patient reported symptom worsening, but does not seem to meet the definition of the pathophysiological changes of PEM discussed in this series.
@Dysautonomia
@OpenMedF
@LBatemanMD
Precise definitions matter, and we hope that those who watch this series will come to understand that PEM is a unique pathophysiological entity with definable biological underpinnings differing from patient-reported symptom worsening with exertional activity in other illnesses.